MomtoGiuliana

I have POTS. If I need to give someone a super short explanation of my condition, I often say I have a cardiac condition, even though it's not really accurate, I guess. I also sometimes say I have an electrophysiological/neurological condition. Isn't it horrible when we feel we have to explain ourselves? I understand your issue with standing. I can stand still for longer periods now than I could, but I have some days better than others. I have a job where I have to stand for hearings, etc. in front of County Commissioners. I have this fear still that I will start to feel faint and really embarass myself. Do you find that standing in certain positions helps--like leaning forward and holding on to something (like the back of a chair), standing with one leg slack, leaning against a wall? These help me often to stand for longer periods, and are less conspicuous than sitting down. Katherine

Thank you everyone for your responses. It has helped to put my family's minds at ease and has included some other information and ideas that will be helpful when my sister sees her doctor. We appreciate it. Katherine

I strongly "second" Merrill's statement. I don't feel that POTS has sucked everything good out of my life indefinitely" -- not even when I was in a disabled state, although that was the hardest time in my life, so far. I think if you read through the discussions on this board, you will see that there are many POTS patients for whom this is true, if not for all of us--that we have many good things in our lives. There are definitely far worse conditions out there that people live with, unfortunately. Like I said before, thisblows, for many POTS patients, the very disabling symptoms do not last indefinitely. And also like I said, in my case, I am now back to working and exercising, and I live a normal life. I do take medication and I take extra salt and plenty of fluids, I avoid heat and other situations that can induce symptoms for me. As briarrose said, it can at times be difficult to handle symptom management, which is why having a support group like this one certainly helps. It helps sometimes just to know that others are going through the same thing you are, and UNDERSTAND. It also helps to learn of treatments and strategies others use to ammeliorate symptoms. Maintaining a positive, can-do attitude is not always easy when you don't feel just right (or you feel awful). Having a place to come to where others with your condition (or who have loved ones with this condition) support you, share experiences and build you up, like this place, is wonderful. Maintaining a positive tone, as we do on this board, is valuable for this purpose, too. thisblows, I hope you find our responses and thoughts helpful. Katherine

thisblows... This is a complex question, that as Steph says, it isn't really known what CAUSES POTS--and there are probably multiple causes. However, for many POTS patients, there are triggers that exacerbate symptoms or make them obvious. Triggers can include virus, pregnancy, allergies etc. If the trigger can be managed or removed, the person can often improve (but not always). I would say that initially I developed, or first noticed POTS symptoms in my early 20's (about 15 years ago), but they weren't terribly bothersome, didn't interfere with exercise or a normal life, and I certainly had no diagnosis. It wasn't until I became pregnant for the first time at age 33 that the symptoms became unmanageable. So, in other words, in my case, pregnancy brought on such strong POTS symptoms that I was disabled by them, however, I probably had the condition subtly for many years prior. However, on treatment, I am now, a year after being diagnosed, functional again, able to exercise, etc. Although not back totally to my pre-preg state of well-being. Katherine

What I have read in most patient literature about POTS is that for most patients, POTS symptoms eventually resolve to a "manageable level". My specialist doesn't paint such a rosey picture, but he did tell me that the MAJORITY of POTS patients he has seen, improve with treatment and time. Some stay the same or get worse. And, he said it is hard to predict, except that those for whom the condition arose spontaneously, without an obvious trigger like a virus or pregnancy, are more likely to stay the same or get worse than those who developed POTS in response to an obvious trigger. But even among those who develop it spontaneously, there are many examples of such patients recovering well--with only minor symptoms remaining. I am curious too if there is any research out there on this--I haven't seen it myself.

Amy Hmmm, I have POTS that developed during pregnancy and got terrible postpartum, and had this same blood test result about a month after delivery ("moderately positive" anticardiolipin antibody). The neurologist who requested this test and reviewed it with me said that it is frequently seen in pregnant and lactating women and tends to go back to normal following end of lactation. So, to answer your question--I don't know! But, I did have that same result you did postpartum.

I am mostly writing this to soothe the concerns of my mother! I have POTS and my 25-year old sister has just been diagnosed with POTS. She lives in Savannah, GA, btw. She found a cardiologist with some knowledge of it, but he's not nearly as knowledgable as my doctor unfortunately. Anyway, I take a beta blocker and an SSRI and it has really helped me tremendously. Her doctor started her on atenolol a month or so ago. Although this helped the tachycardia, she still has many other symptoms, some of which are getting markedly worse, including anxiety, depression, jitteriness, fatigue, weakness. Her POTS doctor says he is not qualified to prescribe an SSRI and is sending her to a neurologist for that. Anyway, my mother is concerned that it might not be safe to take both atenolol and an SSRI and for some reason she doesn't trust the neurologist or the cardiologist. SO, I thought I'd ask if anyone on this forum is on this combination, just to ease her mind a bit. Also, if you take or took atenolol alone, did you have any significant side effects, and what dose did you take? What dosage of the SSRI do you take and which one? In advance, I deeply appreciate the time you take to respond! Katherine

goldicedance What is junctional tachycardia? Thanks, Katherine

Merrill--yes that makes sense. Thanks for clarifying.

tearose Glad that some bad things have been completely ruled out for you. Thank you so much for opening your heart--and describing to us your coping thoughts. You are inspiring to me.

thisblows... Generally, I would agree that it is a good idea to believe your doctors. However, I have had at least five doctors who were unaware that POTS even existed, so I am not surprised that you are hearing from some doctors that POTS is rare. What my doctor told me, who primarily treats POTS patients and studied POTS/NMH for 10 years at the Johns Hopkins autonomic dysfuction clinic (not sure of the precise name of the clinic), Dr. Nsah, is that it is believed, by physicians who study and treat it, to be a reasonably common condition. Now, this does not mean that everyone with POTS is highly disabled and/or rigorously pursues diagnosis and treatment. Various intensities of the condition exist for some reason. I certainly agree with you that there needs to be more research in this area (autonomic dysfunction, including POTS). I can't begin to answer your questions about the ablations or a pace maker, unfortunately. I know nothing about that. A holter monitor doesn't measure when you are upright and when you are prone, that's the main reason a holter monitor isn't a good tool for diagnosing POTS. Again, this is information from my specialist. He has never said anything about heartrate typically going down at night during sleep for POTS patients, the fact that Merrill mentioned. You are correct that the determining symptom for POTS is, essentially, tachycardia on standing. When my POTS was full-blown, I had a fast heart rate (slightly over 100) when lying down, even when first waking up in the AM. Not all the time, but frequently. Good luck with everything. There is a list of POTS specialists on this website, if you want to check that out. Take Care. I know it is so tough to be feeling rotten, scared and to not have a diagnosis. Katherine

goldicedance I'm so sorry to hear that you have a pacemaker as a result of POTS misdiagnosis. In my experience and research, and what my doctor has told me, you are absolutely correct. POTS is not rare, just not diagnosed properly, and in many people it may be so subtle as to not require treatment or interfere with lifestyle tremendously. Others have it badly and then it eventually gets better on its own, but it never gets diagnosed, except perhaps as anxiety or depression. My doctor told me that it is actually believed now by those few doctors who study and/or treat it, that it is a common condition. I am also not aware that a pacemaker slows down the heart, although this is something I know little about, except that a friend of mine has one to keep her heart from stopping. As far as the holter monitor--I think you are also correct. The holter monitor tests I had shed no light on my eventual POTS diagnosis. The key is the observed orthostatic changes. Anyway, I would also like to be corrected if I am wrong on any of this! Thanks!

Mindy I had these exact symptoms (plus others) when my POTS was full-blown. I would feel burning hot in episodes that had no connection to room temperature. I told my doctor, I understand I don't have a fever, but I FEEL feverish. (He told me it was anxiety...but anyway, that's another story!). I also had terrible muscle aches, like you describe, mostly in my legs. Both symptoms also seemed to have a diurnal cycle with me, and I had them worse at night, like you describe, and also bad in the early AM. EVENTUALLY, it eased off, but it was months and months. Does advil help? Sometimes I took advil, which seemed to help relieve the muscle aches. Ialso had BAD insomnia for weeks, and I would also feel faint even when lying down, as you describe. Reading your description brings it all back to me! I know how miserable these symptoms are--and it is amazing how we manage to cope with them (or coped with them) day in and day out. I know there were many days when I wondered how much longer I could bear it. I do hope that you move/continue to recovery. It can be a very long road. What eventually got me back to recovery was low dose beta blocker, SSRI, salt, fluids, and slowly stepped up exercise. Your treatment scheme will probably be unique to you. It takes incredible patience, and I think, belief in yourself (which is terribly hard when you feel so awful). Good thoughts your way... Katherine

Dear thisblows I have POTS and I understand your fears and frustrations very well. You've gotten great advice from everyone. Hope you have a good doctor who can sort all of this out, as many doctors do not have much knowledge about autonomic dysfunction. There is so much unknown about this condition, and there appear to be many triggers and perhaps causes of it. If this is what you do get diagnosed with, don't dispair. There are many treatments available. I was so sick with POTS starting about 2 years ago (pregnancy/postpartum) that I couldn't walk or stand. Now, I am working 3 days a week and caring for my toddler, and exercising again. I am on a low dose of beta blocker and low dose SSRI. I am not back to "normal", but I am highly functional. I've recommended this book several times, it has helped me in rough periods with POTS: *Spontaneous Healing* by Dr. Andrew Weil. It's good that you are reaching out for advice and seeking answers. Good luck and let us know how you are doing.

Merrill So sorry that you had a disappointing first try with IVF and that your symptoms flared on top of everything else. You are going through such a tough time right now and I sympathize with you--and send my good thoughts. Any even minor surgical/medical procedure sends me into a bad POTS episode. I wonder if the IVF procedure did the same to you. Meditation does help me too, and breathing exercises (have you read Spontaneous Healing by Dr. Andrew Weil? It's a helpful book, especially for times like these.) Allow yourself to grieve. We're all here to support each other as much as we can, so please write as much as you need to. Katherine

Jackie Didn't read all of the posts in response to your original, but I just want to say that I am so disgusted and disturbed that a psychiatrist ESPECIALLY would behave that way to a patient. Something is WRONG with him. I hope you can find someone else. In my limited experience with a psychiatrist, I went to one when I was still undiagnosed (was bullied into it by my gp) and she was SOO nice and LISTENED. She said that she didn't see evidence of mental illness/instability, and didn't prescribe any medications, I had so many unexplained physical symptoms--she helped me re-convince myself that more was wrong than this out-of-the-blue anxiety and "depression". There has got to be a better psychiatrist out there for you to consult. Maybe a woman--I think a lot of male psychologists unfortunately are more likely to subscribe to the "old school" of thought that women tend to be "hysterical" or imagine problems. Best wishes. It will get better! Katherine

Purplefocus Oh, I so understand your frustration. I went to the ER several times after my daughter was born with all my frightening and unexplained symptoms and with new ones cropping up as my condition deteriorated/POTS symtpoms got worse in my post partum period. Each ER visit was a complete waste of time and energy, as the doctors scratched their heads and sent me home with no clearer understanding of what was wrong. Most male doctors WERE kind and sympathetic and seemed to realize that something was truly wrong. The female doctors and nurses seemed more suspicious that I had post partum psychosis of some kind. I think I too developed a reputation among the ER staff--oh here comes that postpartum woman with the bizarre symptoms again. I was finally admitted to the hospital and that was when I had the worst experience with a doctor--the hospitalist assigned to my case. I will never forget this man. He lectured me for refusing to accept that I was severely depressed (he had talked to both my general practitioner and my ob-gyn and had discovered that I had been offered medications for depression and anxiety and refused them b/c I was breastfeeding and didn't believe I needed them), and that because of this I was affecting my entire family and this was unfair to them. That he has seen patients diagnosed with brain tumors less depressed than I was. He tried to make me admit that I was sleeping all the time and not eating properly b/c I was depressed. Of course, I burst into tears during his tirade, which made him even further convinced that I was a mental patient. The fact that I couldn't stand up, that my heart rate and blood pressure were erratic and that my electrolytes were off, were no indication to him that anything serious was wrong. It still makes me so angry when I even think of this doctor! (I also remember him telling me that breastfeeding was over-rated anyway. That he had never been breastfed--and look at him!) The man was incredibly arrogant. Anyway, the great thing was that Dr. Nsah, my POTS doctor, was called in, and diagnosed me with POTS and told me that it was quite common for doctors to confuse POTS with severe depression. General hospitalists, general practitioners and ob-gyns must be educated about POTS. I want no one to go through what I did!

I feel for you. I was also denied health coverage--by Golden Rule, Inc.--my husband and daughter are on it. The broker suggested I try back in a year if I don't have any changes to my health in that time! What a wonderful country we live in--the wealthiest in the world, and we refuse to take care of our sick people properly. Anyway, I went from full-time to part-time and can still get Blue Cross/Blue Shield Carefirst coverage through work, but have to pay 100% of the premium, plus a $300 deductible. It's about 1/3 of my total salary per month.

Merrill Hope the procedure went fine (today?). To answer your questions, my daughter Giuliana is 16 months now. I don't know what I would have done without my mother. She essentially lived with us for the first five months of Giuliana's life. I would never have managed on my own. We would have had to hire someone. I am doing quite well now. I do have POTS symptoms, but they are relatively minor most days, and I am able to work 24 hours a week and take care of my daughter the rest of the time. I am still on low dose beta blocker and low dose SSRI. I make sure to get plenty of fluids and at least one serving of a high salt food a day. Despite all I have been through physically and mentally with this illness--yes, it is all worth it a thousand times over. Really, the illness has made me a stronger and more emotionally mature parent than I might have been otherwise. And my daughter is the light of my life. I wish you the very best and look forward to hearing how your journey towards parenthood goes. Katherine

1. Name: Katherine 2. Age: 35 3. Dx: POTS 4. Age at dx.: 34 5. Where you live: MD's eastern shore 6. Symptoms at worst: bedridden, no exercise tolerance at all, beyond exhausted, blurred vision, dizzy, tachycardia, tremors and jerking motions, loss of appetite, extreme thirst, nausea, insomnia, burning sensations in skin, muscle pains, felt unable to regulate body temperature (too cold or too hot), anxious, depressed (I wonder why!?) 7. Symptoms at best: very mild tremor, exercise intolerance, easily tired (must have 9 hours of sleep a night, plus a couple naps a week), weird feeling like there is glue in my chest, usually have to stand from lying or sitting slowly. 8. Medications/treatments, etc. that didn't work for you--being diagnosed with depression! 9. Medications/treatments, etc., that do work for you--salt, fluids, low dose beta-blocker, low dose SSRI, slowly stepped up exercise regime, breathing exercises to assist relaxation

Runnergirl Yes, I totally agree with you that there must be a hormonal fluctuation connection. Perhaps someday it will be understood. Every cardiologist I have ever talked to or seen has told me the same thing--this is very common in young women, who are generally otherwise healthy. It is hard to believe that something that feels rather dramatic is actually benign, but yes, I too have learned to live with it. Yes, I know where Crofton is. I also went to grad school in the DC area--College Park. Katherine

It is comforting, very comforting, for me to know that others have this nagging, disturbing symptom. I have been to the ER too with irregular heartbeats on 2 occasions in the past five years. I now just accept it when it happens, even if prolonged. My cardiologist also tells me it is nothing to be concerned about, and VERY common, especially in women. My cardiologist thinks I do have episodes of atrial tachycardia, based on my description, but he said it is more bothersome than anything, since it lasts short periods and doesn't make me faint. Runnergirl--where are you outside of DC? Just curious, since I am also "outside" of DC--Berlin, MD (near Ocean City, MD). Katherine

Good luck with the IVF process. I know it can be stressful and doesn't always work the first time. I have not gone through the IVF process. I had POTS symptoms for years, but didn't know that was what I had until postpartum. Pregnancy (at age 33), about halfway thru, pushed me into severe POTS. It got somewhat better in the last month of pregnancy. Anyway, you can read my story (Katherine's story) on this website. Every pregnancy experience and every woman is so different that I suspect it is hard to predict what you experience might be. Many POTS patients say they felt the best ever during pregnancy. The fact that you have a diagnosis and are under treatment for POTS should make your pregnancy experience better than for someone undiagnosed regardless. If you look back throuh previous discussions on this board, you will find some other discussions on pregnancy experiences. Again, I wish you the best. Katherine

When I was first diagnosed my POTS doctor gave me a list of potential triggers for POTS symptoms (according to the Johns Hopkins Clinic). There were many, but one of them was scary movies and another was the sight of blood. I thought this sounded kind of strange, but the autonomic system is connected to and affects so many aspects of our bodies and minds, it isn't surprising. Anything that triggers flight or fight response in a normal human, even if slight, would have a greater affect on someone with autonomic dysfunction. I've never fainted from seeing blood, but I have felt close to it after having a lot of blood drawn for tests, especially if it is done in the AM. I don't like scary/violent movies, but I don't think that aversion is related to POTS! Katherine

Yes, I get this too. After doing a lot of lifting or more strenuous or prolonged exercise than usual, I get shaky (short-term). This has always happened to me, and I used to think it happened to everyone. Now, I suspect it is only us POTS patients.